My evening routine..... (caution: the word poop comes up)

Okay, so I thought I would share my typical evening routine. It doesn't sway much from day to day... especially since my son doesn't do well at all with changes in routine. I'm sure many can relate. So, it starts in the late afternoon with a few "chores" I have to do - and I swear for some reason until these 2 items are done and checked off my list I feel a sense of weight hanging over me. The first is preparing Ty's flush. We mix 500ml of water, 2tsp salt, 1tsp Castille Soap. I then get a gravity bag- for those that don't know what this is- it's just like an IV bag you would see in a hospital setting- but it uses gravity to drain rather then a pump. So I add it to the bag, then I have to flush his "cord" line. That's literally a cord tube that hooks to his mickey button when it's time to start- that is external on his body. Imagine a beach ball- how you pull out the little plastic plug to blow it up- that's kind of how this is, but instead we pull out a little plug and attach this cord. Anyway, back to preparing his flush. Have to let a little drain to make sure there's no air bubbles. Oh we have learned this one the hard way one too many times- how bad would you feel if you either A. forgot to turn the flush on so it drains, or B. didn't get air bubbles out of the line so it doesn't drain- and there's your kid, sitting on the potty, waiting, waiting, and waiting- but he never notices, never tells us, hey, it's not draining... nope- and if we don't physically check the bag at some point- (which has happened) then he has sat there for an hour, and nothing! Oops. Oh boy- how are we going to make up for this one? A good day a cookie works, a bad day- oh man just watch out. But a little confession here.... shhh... his potty time can sometimes be a nice little respite. Not always, as one of us usually has to entertain him- play a game, just be with him. Which as you can imagine isn't the easiest task at the end of a day, there's still dishes to do, girls to get ready for bed, make lunches if it's the school year, homework, etc.. yes lots to do in the evening no matter how well we plan. So, his flush. Sometimes he's occupied by a video, sometimes by his DS, sometimes by crafts. Pretty much never know what will help him to stay calm and sit. Which is what he has to do. And from anywhere from 45minutes to 90 minutes, if he's not all "cleaned" out. Sometimes we take him off too soon, and well, ugh! So, this is how it works- we let the 500ml solution drain directly into his colon, just below his cecum (anyone take Anatomy here?)- thank goodness I did. Anyway, it literally irrigates his entire lower bowel - emptying as poop into the potty. Sorry for the graphicness - don't think that's a word, but oh well... poop in our house is an every day conversation. I'm not kidding- ever since June 15, 2004, there hasn't been a day that my husband and I haven't discussed his poops. Day 5 of his life was when we knew something was wrong. So flash forward, here we are, still discussing his poops. We always have to monitor because we need to be wary of signals that he's impacted- backed up... but this is not constipation like you think it is. His stool gets stuck all the way at the top of his large intestines, sometimes flowing into his small intestines- now that's not supposed to happen- it's supposed to be a one way valve. Well, not his and so the minute he gets backed up, it's pretty bad pretty quick. Vomiting, no appetite, bloated, and then it means it's time. Time for a hospital visit for disimpaction. Luckily he has the button, so it's not surgical, but he's under anesthesia, he's flushed with their solution, sucked out, they probe, poke, and suck with a vacuum. The button is taken out for them to access inside- so that's why it's not surgical, he literally has an exposed hole from his abdomen to the world. Kind of strange- but also good. So, back to my routine- you can kind of see how important these nightly flushes are- because even doing it every night (for the past 4 years 4months, and 6 days (not that we've counted)he still gets impacted 2 to 3 times a year that require a hospital visit. They know us well over at our children's hospital- they take good care of him and us and try their best to ease all his discomfort and get us out of there as quickly as possible. Alright, nightly flushes. Like clockwork they occur at 7:00pm every night. Yep, and if we get too far from that time, oh boy- again rigidity. So it pretty much controls our evening, and if it's not a night he's willing to cooperate (meaning just get on the damn potty), wow it becomes a circus act. This is where his PTSD really kicks in. Those hospitalizations since he was 2, invasive tests, doctor's visits, more hospitalizations, and more procedures- can you imagine when you have so many struggles, and this all occurred well before we knew about his Autism, Sensory Processing Disorder.... all delays, all issues, all behaviors were originally blamed on his bowels. Well, a lot got missed for a long time. But that's another story for another time. Back to his flush. 7:00pm, Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, then Sunday again... yep- not one break. And you would think after doing this everyday for 4 years, 4monthes and 6 days- it would become a routine for him- but nope! Every time we never know what to expect from him. And even on the greatest of days, he's so happy, so joyful,playful, engaging- and then it's flush time. And it sometimes will be no big deal, but sometimes it will turn that amazing day into well, crap (no pun intended)! So, after he completes his flush- we find it's best to not even let him leave the bathroom otherwise it's very hard to get him back for teeth brushing. So off potty, jammies on, now it's time for teeth. Now he has brushed his own teeth maybe 10 times in his life- he sometimes can do it- but most days, not happening... and it's better then it used to be- (it was like world war 3), but daddy still brushes his teeth every night. It's a goal of ours, but so not a priority when he isn't able to leave the house- I"m sure you can understand that. Believe it or not- it takes a lot of coordination, planning, higher order brain functioning /thinking to brush your teeth. Many of us, don't even think twice as to what we have to do- and for little kids, when they want to mimic mommy and brush there teeth- oh it's so sweet... my girls did that-not him! Gee, wonder why?? Every day tasks can be very difficult, when you have Autism. It takes a lot of planning and processing and heck just the damn toothpaste can set him off, putting something in his mouth can feel horrible to him, causing a reaction. Now, it's so much better then when he was younger. We have one kind of toothpaste we use- nothing else ever. Brian is so careful to be gentle, to help calm him, let him know he's almost done. We've got a system! So, after teeth- our summer routine has been to watch one family show. You have no idea how exciting this is for us. We can all actually sit down in the same room, at the same time and watch a show (of course that I choose because we would like to prevent a war from breaking out at bedtime). Ahh it's so nice to have this- we historically never could do this, never all together. It just ended bad every time- then you begin to realize this isn't working, separate, off to bed. So, it's really nice to have this little bit of family time. Right now, it's the "Cosby Show" that's chosen. We all agree, it's appropriate, and mom and dad enjoy watching it too. Then, hopefully we got through this moment without problems (yes that still happens)and Brian takes Ty to bed. I take the girls to bed. (I have to admit, I really enjoy my night time talking time with them. It gives me a chance to talk about our day, put a spotlight on them without disruption and their favorite part of the day, how was this, how was that- good night time stuff!). Then hopefully off to sleep-land I go! (oh, almost forgot, before teeth brushing- med time!... luckily he knows how to swallow pills- but we put them all in one little scoop of sorbet, again same flavor, same brand, always) These are his night time meds. Now off to sleep; and I pray every night he will sleep at least until 5 or 5:30am. Anything past that- wow bonus! He has a lot of sleep problems. It is not uncommon for him to be up at 2am in the other room watching TV. This is a good scenario. The bad scenario is him awake at 2am, and having this need to have the entire family awake, he is literally bouncing off the walls, and disrupting all of us too! That is not a good night! These occur more often when he's more dysregulated... I put these definitions in the column from my favorite websites. The special needs world, brings a whole new language. Heck, I'm professionally a mom, care giver, nurse, behaviorist, therapist, Occupational therapist, teacher, pharmacist, anything else??? You get the picture. So, we hope sleep goes well, for the entire family, because soon enough, we'll be woken up to start a new day all over again.